AITL T-Cell Lymphoma & Returning Rash

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depressed63
depressed63 Member Posts: 61 Member
edited November 2023 in Lymphoma (Hodgkin and Non-Hodgkin) #1

Husband had a bad rash all over his body last November with swelling in his hands and ankles. His rash lasted 2 months. He didn't get an official diagnosis until September of this year. He's had 2 rounds of CHOEP and the rash is starting to return. Has anyone had the rash return while on chemo?

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  • po18guy
    po18guy Member Posts: 1,466 Member
    #2
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    Sorry to hear this. AITL patients are few and far between. I cannot honestly remember if my rash came back during treatment. At this point, his scans will be crucial. If the AITL is responding, then symptoms are not nearly as much a concern. On the other hand if the AITL is demonstrating progression, that would generally place it into the category of chemo-refractory disease. Although that sounds rather dire, such a disease status fortunately opens the door to a variety of different and potentially more effective therapies. Among the newer therapies would be Romidepsin, Pralatrexate, Belinostat, Adcetris, Mogamulizimab and several other drugs, drug regimens and clinical trial drugs. More treatment information is available here: https://lymphoma.org/wp-content/uploads/2022/07/LRF_Angioimmunoblastic_T_Cell_Lymphoma_Fact_Sheet.pdf

    It would be a good time to determine if doctor is concerned about the return of the rash. Additionally, ask doctor about his scans and go from there.

  • depressed63
    depressed63 Member Posts: 61 Member
    #3
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    Thank you.

  • po18guy
    po18guy Member Posts: 1,466 Member
    #4
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    Here is slightly more comprehensive information on treatment options from the Leukemia and Lymphoma Society: https://www.lls.org/sites/default/files/2021-05/FS25_PTCL_1_21.pdf

  • depressed63
    depressed63 Member Posts: 61 Member
    #5
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    Thank you. He had a PET scan it is looks positive but we haven't went over the results with the doctor yet. We meet for stem cell transplant consultation in a couple of weeks. Not sure what to expect from that. I've heard some do better than other's. I'm sure I'll need to take a couple of weeks off since we have to stay near the hospital.

  • po18guy
    po18guy Member Posts: 1,466 Member
    #6
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    https://csn.cancer.org/discussion/comment/1711037#Comment_1711037

    Good. My hematologist used treatment which was as aggressive as I could tolerate. I am grateful that he did. It really beats you down, but gives you the best hope for a long-term remission. The transplant is huge. Honestly, you may have to ask for a leave of absence, as many facilities require that you live within 30 minutes drive of the treatment center for the first 100 days post-transplant. If you do, then great! If not, then it might be time to inquire of the facility's options for housing. We were fortunate enough to find a nice apartment about 4 blocks away that would accept a short-term lease.

    Let me know when and if you want to hear more about the transplant preparation and experience, as I would be happy to help.

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